My husband diagnosised with PLS

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JerryAlex

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Joined
Nov 5, 2007
Messages
6
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Alabama
City
Daphne
Hi! I signed up for this site so my husband could get on here and ask questions about PLS. Right now were trying to absorb what the doctor has said. I'm really concerned about my husband's state of mind right now and not sure what to do for him. Both of my daughter's Stephanie and Shannon have asked some good questions. Maybe someone could tell us how they helped there family member to deal with this and not give up on living. Any suggestions?
 

Stephanie

Member
Joined
Nov 4, 2007
Messages
25
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Loved one DX
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US
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Alabama
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Daphne
Hey mom! Now we're all on here! Love you and we're all going to get through this!
 

brooksea

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HM
Hi JerryAlex,

Sorry you have to be here. My husband has ALS and when he was first diagnosed it was like the end of the world. Fortunately, we had a very compassionate neuro that gave him the diagnosed. He immediately prescribed antidepressants for both of us. This did help, but my husband stopped taking them. He then spiraled into a terrible depression, so he's back on them again. He has never taken antidepressants in his life and didn't want to, but now he knows they are helpful.

It took my husband a couple of months to get over the shock of having such a disease and another several months to get over the anger. He was diagnosed 09/06 and still gets angry and sorrowful now and again. But we have a 7 year old son that needs a Daddy, so I've had to give him that pep talk to bring him around sometimes.

The thing that has helped him most is focusing on something that he is still capable of doing, something that gives him a goal to work at. What does your husband like to do that wouldn't cause him hardship or frustration that could take his mind off his predicament? Can you and he maybe go on a short trip together to get away as a couple where y'all will be in a peaceful environment and perhaps he will discover resolve to fight this battle instead of let it defeat him?

It is difficult to say the least to deal with a spouse that has a debilitating disease. The road is rough, but we've got to jump over those pot holes!

There is hope!

Hang in there and good luck to y'all...
 

CindyM

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Welcome, "Mom." You guys sound like a great family. Your DH is one lucky guy to have so much support around him at this time. He probably feels like he's been hit by a truck right now but after the information settles in things will pick up. Glad you decided to join us. Cindy
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
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Altoona
I feel your pain.

Hi Jerry,
My husband has also recently been diagnosed with PLS. We will be at UPMC Pittsburgh for a second opinion December 3rd. I am praying the diagnosis does not change to ALS as the progression seems to be so rapid. It is a horrible feeling watching someone you dearly love go through such a terrible physical crisis. Feels as though you are sitting on a time bomb just waiting for the explosion. God Bless you. I pray for strength daily as we are desperately trying to cope.

Gracie
 

sabdmb

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Joined
Nov 3, 2007
Messages
8
Reason
PALS
Country
US
State
NC
City
Raleigh
Hi Mom. It's great to see you found this place. Now we have to get Dad on here so he can see just how much support he has and realize he doesn't have to go through this alone. Steph said tonights visit wasn't as bad as it has been. Maybe he is starting to come around. Hopefully it was not just a front to be strong for his daughter. I will keep the pictures and videos of Caroline coming for ya'll to enjoy and also to remind Dad of the brighter side of things right now. I love you, Shannon
 

Stephanie

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Joined
Nov 4, 2007
Messages
25
Reason
Loved one DX
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US
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Alabama
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Daphne
Gracie,

I'm very sorry about your husband and hope you have a positive visit w/ the doctor in December. I stopped by to visit my dad today...and it actually was a good visit...now whether or not he was putting on a happy face for his baby girl, I'm not sure, but he did say some things that made me happy. He did admit that this isn't a DEFINATE diagnosis...and he even said that he's lucky he was at least able to get around well for 48 years. I'm hoping he was being sincere w/ saying that....b/c there are people that aren't as fortunate. I think we will all have good days and bad days...but I'm thankful to have all of you to talk to and relate too, and I'm thankful to have such a wonderful family. I truly believe God has a plan and reason for everything...and even though some of you have PLS or ALS...or some of you are relatives of those w/ it...that doesn't change the fact that any of us could go at anytime. We just have to make the most of everyday! This sitution sucks...but it has allowed me to meet ya'll....and that's a positive thing. We just all have to have faith! :)
 

Susan613

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Joined
Oct 27, 2007
Messages
2
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
Florida
City
Brandon
Rilutek

Hello Everyone,
I just wanted to ask a question. My Mom was diagnosed with (probable) bulbar ALS over the summer. She cannot talk anymore, has trouble chewing, but can swallow ok, for the most part. She had a PEG tube inserted. Her Dr. prescribed Rilutek, but we haven't filled the prescription as of yet. I was wondering how many of you that write on this site, and have ALS, or have a loved one with ALS, are taking Rilutek? I know it's an individual's choice, but do you think it is helping?
Thank you, and take care. Susan
 

brooksea

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Susan,

My husband's neuro gave him rx for Rilutek but he never filled it. We researched it and decided the side effects were not worth the extra months that they "think" might be added to his life. One of the side effects is decreased lung function!?! Not trying to discourage you, as it is a personal choice. But after checking with other PALS, he made the decision not to take it. Here is a link explaining side effects:

http://www.rxlist.com/cgi/generic/riluzole_ad.htm

Every medicine effects different people in different ways and your Mother may have no problems with it.

Good Luck!
 

robc

Active member
Joined
Jan 23, 2007
Messages
46
Reason
DX UMND/PLS
Country
US
State
Oregon
City
Silverton
Hi JerryAlex,

I'm sorry you're having to deal with a PLS diagnosis. I think focusing on what you can still do is great advice. Unfortunately that's easier said than done. I have ALS, and I can still talk, eat, breathe, and walk a bit. Should be living in the moment & enjoying the "good times". I think that'd be maybe a bit easier to do if I didn't have so much pain all the time.

Aside from focusing on what you can do, I would definitely go for the anti-depressants/anti-anxiety medication. I didn't even realize I was anxious - I had never had any problem with anxiety before. I was finding myself yelling at the kids, unable to handle any sort of loud noises (not good with a 4 & 6 year old), and not wanting to engage at all with other people. Celexa has helped tremendously. I'm at least halfway back to my normal calm self.

How is your husbands mobility? I get very tired easily from walking & any sort of activity really triggers my spasticity and pain. I had asked my neurologist about getting a wheelchair & he advised against it & said if I got one now I'd "never walk again". So I found myself sitting in a recliner much of the day while my wife & kids played outside or went out somewhere. I finally decided this was stupid & bought a small power wheelchair that comes apart in 3 pieces and can fit in just about any trunk. I also bought a heavy duty mammoth outdoor scooter that can handle just about any terrain for getting around outside on our rural property.

The feeling of MOVING again without pain or fatigue was wonderful. That really lifted my spirits more than anything. I now take the kids out by myself again.

I have a cane for around the house & use a walker at night if I'm really worn out.

The other thing that has helped me is switching doctors. I waited a long time to switch from the first neurologist. The guy was flat out uncommunicative. I figured he was smart but not a people person. At any rate, three neurologists later I am now working with someone who is absolutely fantastic & has helped tremendously with medication, physical therapy, assistive devices, etc.

If your husband has weakness in his ankles & foot drop, Ankle Foot Orthotics are very helpful. I wasn't really tripping, but I didn't realize how much energy it took to hold my foot up or lift my leg up higher to clear my foot. It wasn't even really dropping as much as I've seen some people's feet, but when I walked my toes were hitting the ground before my heel if I walked barefoot on hardwoods you'd hear a slapping sound with each step.

It sounds like you've got a very supportive family. I hope your husband is able to get in the space of focusing on what he can do and adapting when he needs to.

If you haven't already, you should check out PLS-Friends on Yahoo Groups. It is a very active group.

Take care,

Rob
 

Stephanie

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Joined
Nov 4, 2007
Messages
25
Reason
Loved one DX
Country
US
State
Alabama
City
Daphne
I just want to say I think ya'll all are great! I, as well as my mother and sister, are all very thankful for having such supportive people to talk to. It's people w/ positive attitudes like yourselfs that keeps me going...and grounds me, reminds me of what's important.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
My Dear Friend im a PLS patient ,so your going to hear it right from the horses mouth . If you want to lay down and give up they'll throw the dirt over you , BUT THE CHOICE IS YOURS no one can help you if you do not want help . on the other hand just by offering your expieriences with your disease you are helping someone and in turn making yourself feel better . Geo
 

CindyM

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3,543
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Learn about ALS
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New England
City
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It's people w/ positive attitudes like yourselfs that keeps me going...and grounds me, reminds me of what's important.

Well said, Stephanie. That is the main reason I come here also.
 

APC

Member
Joined
Apr 29, 2007
Messages
29
Reason
Loved one DX
Diagnosis
1/2008
Country
US
State
Ohio
City
Lima
Husband with PLS

Hi,
My husband has been dealing with the unknown for a year, then was diagnosed in sept w/ PLS. He's 47 and I'm 45. The hard thing for me is watching him waste away. He's 6'3 and was strong. I see muscle atrophy. What hurts me is to see him frustrated to tears. He has difficultu speaking at times,getting his voice to project. He is still able to work, as an engineer, but his frustration during meetings and with associates asking him "what's wrong" is taking it's toll. We saw our Dr. last week. He was surprised that my husband was still pretty strong. I'm an RN. My husband is pretty open to my medical suggestions. How do I approach him to possibly get an antidepressant for the emotional aspect of this disease. The dr. does fell that this will turn into ALS eventually. We both are on the emotional roller coaster! Any suggestions!?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi APC I'd suggest the straightforward approach. Hey dear this is a difficult time and a little help won't hurt You can always quit it when you feel you don't need it, might work.
AL.
 
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